You’re No Burden, I Assure

You’re No Burden, I Assure

One day running errands with Chloe in her wheelchair and carrying my baby Sam, a very nice lady stopped me to chat about Chloe. She ended by saying, “thank you for carrying such heavy burdens and still being such a happy person.” I know she meant that with all the compassion and empathy in the world and I certainly wasn’t offended, but for Chloe’s sake I wanted to just shout from the rooftops that she is not a burden! These lyrics came to mind: You may need me to carry all your weight, but you’re no burden, I assure. You tide me over with a warmth I’ll not forget and I can only give you love....
Adapted Card Holders

Adapted Card Holders

Are you the caregiver for a person with little to no fine motor strength? Just because a person is not able to hold a hand of cards doesn’t mean that person should miss out on playing card games! I love these adapted card holder ideas, mostly because they are simple and truly work great! Trust me, we’ve used them at our house for everything from Old Maid and Go Fish to communication cards and medication reminders. The best part? You probably have all you need to make these work without even making a trip to the store. Images linked to...
Ta Da!

Ta Da!

I don’t know a person who isn’t busy. Everyone’s got a to do list a mile long. I’ve attended several workshops on living a life that makes you happy and almost always one of the main points they make is the importance of setting long-term, short-term, and daily goals. I used to use a to do system that looked something like this: So obviously I never actually wrote a to do list like that, but I just had a mental list that was a lot like that and it is pretty comical to think that would ever work. I always knew I had a lot to do, but all that stuff was just jumbled all together and I always felt overwhelmed. So since that wasn’t working and after attending a workshop that reminded and motivated me to live a more purposeful and meaningful life, I got an app that helped me keep track of tasks and goals. That definitely made me more efficient, but after awhile, I started to recognize a trend. Almost every day, things came up and made it so I couldn’t complete everything I had planned. And the majority of the time, the things that came up had to do with being a caregiver to a child with seizures, muscle pain, therapies, IEP’s, sensory issues, medical procedures, medical appointments, etc., etc., etc. If you’re reading this, I’m sure you understand. One day I was feeling discouraged about all I wasn’t doing and my compassionate and wise friend reminded me all that I had accomplished. I realized she was right! I had been focusing on what I wasn’t...
Sibling Troubles? Helpful Tips From Parents!

Sibling Troubles? Helpful Tips From Parents!

We posted a couple weeks ago how you shouldn’t let having a chronically ill or child with special needs hold you back from having more children. Overwhelmingly people who have gone on to have more children are happy that they did and feel like it was the best decision for their family. But, it’s not easy. How do you go about making sure their siblings get as much attention as your more demanding child? It’s easy for mom and dad guilt to creep in, to think that you aren’t doing enough even though you might be. Here are some ideas from the experts, special needs parents. Take them on errands by themselves – Even short trips like the home improvement or grocery store, or even to the gas station, will provide them moments of one on one attention with a parent. It will make them feel special and listened to. Plan a date night (Or a date day!) – A few parents recommended this. Give each sibling a night a month, let them choose what to do, where to go, and have both parents go on the date. Getting away from the distraction of a high needs sibling is crucial to building a relationship – even if it’s only for a few hours a month. Late nights – Have a special night where the sibling gets to stay up a little later and spend time with mom and dad. Remember how cool it was staying up past your bedtime when you were younger? It’s great! And time spent snuggling with mom and dad make it even more special. Find them...
3 Reasons I Don’t Mind When Young Children Point and Stare at My Child With Special Needs

3 Reasons I Don’t Mind When Young Children Point and Stare at My Child With Special Needs

I might be making several generations of special needs parents angry by saying this, but it’s true. I don’t mind when young children point and stare at my child with special needs. In fact, I like it! I’m such a rebel, I know. ‘Don’t point’ and ‘don’t stare’ are pretty basic social recommendations for people of all ages. But let me explain my deviant way of thinking by sharing two examples from the happiest place on earth…you guessed it. Disneyland! Example one. I was waiting with Chloe for the rest of our party to get off a ride that Chloe wasn’t able to go on. We were sitting on a bench and a very cute family was sitting next to us. The mom was passing out snacks and planning their next stop when one of her sons, probably 4 or 5 years old, kept looking at Chloe and/or her wheelchair. His mom noticed and told him it was not nice to stare. Then slowly but surely, he wiggled his way closer and, pointing at Chloe’s pink wheelchair, asked me, “Why is she sitting in that?” I smiled a big grin, excited to talk about how we all have differences and planned to encourage him to chat with Chloe because, well, she loves making friends! Before I got a single word out, his mom went in to panic mode. I’m sure she was thinking, ‘Oh no. He was staring, now he’s pointing and asking questions. He is breaking social protocol. What an embarrassment!’ She grabbed him and angrily told him how it is not nice to point, stare, and annoy strangers....